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Dr. Marion Blank

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Autism and Apps: An Open Letter to '60 Minutes'

Posted: 11/17/11 04:26 PM ET

Dear "60 Minutes":

As a psychologist with a long-term commitment to children with autism, I watched with great interest your recent segment "Apps for Autism." The encouraging picture you presented was welcome. Like many parents and many colleagues, I have seen the extraordinary array of skills that children on the spectrum can possess -- even when they are deemed to be "non-verbal" and severely limited in cognitive functioning.

At the same time, I was dismayed by serious failures and distortions in the material you presented. Briefly, what are the failures and distortions? First, the attraction that children with autism have for computers and high tech devices has been long known and described. Apps make high-tech tools more accessible and easier to use, but they do not reflect the quantum change your reporting suggested where children are enabled to become effective producers of language across a vast span of communication.

Second, the segment suggested that well-formed language was inside the individuals, just waiting for a means of expression (namely, the app). But the content of the apps that you showed was essentially a mirror of the language that has dominated teaching programs for decades. Essentially, that language reflects two basic forms: one is labeling or naming objects and people (e.g., using nouns to identify "ball, shoe, man," and so on); the other is language for expressing I want requests (e.g., making various statements about items and actions one hopes to have such as "I want banana" or "I want TV.")

Unfortunately, this content -- despite being widespread in use and expensive to implement -- does little to advance the children's development. As but one example, take the issue of naming. Imagine a child with autism mastering 1,000 nouns -- an attainable feat and one that leads many parents to feel a sense of triumph. Now, imagine taking those 1,000 nouns and trying to actually converse with someone. Within one word, you will realize that it is not possible to speak with a repertoire confined to nouns. Parents may take pleasure in seeing their children recognize objects, particularly when they represent relatively esoteric words such as "dinosaur" and "vehicle" and "locomotive." But the fact of the matter is that training in this area does nothing to enable a child to use language in a meaningful manner.

Consideration of "I want" request language involves different, but no less negative, forces. At first, parents are delighted to see their children making a range of requests. It leads them to believe that this is the start of meaningful interaction. They are convinced that if they show the children that their language "matters," their children are sure to relate better and to converse more. However, as many parents have found, "I want" request language rarely advances beyond "I want" request language. You essentially have a child who uses language to make endless requests and to do little else with his or her language.

As the children enter adolescence, the issue becomes even more problematic. It then is not simply a failure of language to advance, but a major breakdown in behavior. The children are now bigger and stronger and their wants have expanded -- often in realms that even the most giving of parents cannot permit. This leads the parents to deny the requests -- a move that leads the children to major acting out, often in aggressive and destructive ways. When viewed from the children's perspective, this is only reasonable. They have been encouraged for years to believe that the granting of what they want is of the highest priority to their parents. Now these vulnerable individuals see the basic pattern that they have relied on for years being challenged or rejected. What the parents then see is the ultimate outcome of encouraging "I want" language.

It would have been valid, albeit not inspiring, had you said that apps currently are a more attractive device for following the same methods that have long dominated the teaching of children with autism. But that was not your message. The segment clearly was aimed at saying that current apps represent major advances in opening up the invaluable tool of language for the children.

Admittedly, the failures and distortions do not rest with "60 Minutes" alone. The field itself has greatly contributed to the confusion. Since autism was first recognized, language and communication difficulties -- two vast and intricate domains -- have been acknowledged as central to the syndrome. This has naturally led intervention efforts to be focused on these realms.

It has led to something else as well. Its acknowledged importance has meant that one does not have to justify teaching language or communication. It's a "given." And "givens" invariably have unintended consequences. In this situation, one of the unintended consequences has been that program developers need not think, in depth, about precisely what skills can and should be taught. If it's language, it's "good."

This is what has permitted so many programs to concentrate on "naming" and "I want" language since these are the easiest forms of language to elicit. Think, for example, of how much easier it is to get a child to say the one-word name of an object than to generate a complete, meaningful statement about an object. When all language is seen as good, it's sensible to aim for the easiest types. Forces have allowed current intervention efforts to overlook the many disadvantages this "easier" language has for the ultimate development of effective language and communication.

Autism is a relatively new field. The syndrome was first described in the 1930s. Perhaps the situation that we are facing is an inevitable part of the growing pains of a new field. Regardless of the reasons, at this point in time, it is vital that the relevant disciplines (psychology, education, speech and language, neurology, etc.) begin to provide the long delayed, in-depth analyses of what language and communication skills can and should be taught to the children.

What "60 Minutes," with its prestige and power, might have done is to show the enormous potential of software in teaching children on the spectrum while at the same time offering insights into the current instructional situation where children, with and without apps, are not being provided the content that they need for their potential to be realized. That analysis is critical for parents of children with autism, as well as the society in general. Until "60 Minutes," or some comparable organization with a powerful reach, offers that analysis, we will continue to offer false hopes rather than real results.

 
 
 
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06:31 PM on 11/22/2011
"Apps make high-tech tools more accessible and easier to use, but they do not reflect the quantum change..."
Yes, I am so thankful that they do. It is unfortunate that Dr. Blank has not been trained to work with language software or understands the infinite possibilities of an I Pad.
Thankfully, software like Fast ForWord language programs are enabling some children diagnosed with autism to become effective producers of language.
Programs such as Fast ForWord offer audio and visual language training available to parents for the first time without the time and expense of psychologists. Also, for the first time, computers train and instruct without the limits placed on the child by the psychologist and are able to meet the daily challenges and needs of a child with language barriers. The savings alone will help parents afford the much needed instruction that is not possible.
Plus, another great program is Kahn Academy. This site offers free and meaningful instruction. Mr. Kahn has developed a one on one program that can be utilized at any time and offers development tracking.
The I Pad is a integral vehicle that allows the child to learn and repeat the instructions as many times as they want, something a human psychologist or special teacher is incapable of doing consistently on a daily basis.
Software programs already are delivering what a child needs to be able to use language in a meaningful way.
http://www.scilearn.com/blog/autistic-spectrum-asd-children.php
12:26 AM on 11/21/2011
Funny, my son has an iPad. He also has autism. He is not non-verbal. However, a year ago he could recite information, ask for what he wanted, answer fact-based rote questions, and that's about it. He could not ask for information, and he could not answer how and why. Given the iPad and the app Question Builder, he immedicately practiced for 45 minutes asnwering "why" questions. He is now answering and asking questions. I agree with the writer that communicaiton is more complex than this story reported. I also agree that too much time was spent on apps such as Proloquo2Go. I do have to say that she may resent the iPad a little too much. It happens to be a dynamic machine. There are nearly 500 apps ebing marketed to autism. There are countless other educaitonal apps that may also appeal to our population. What really really concerns me is the fact that leittel was done to mention people on the spectrum with any hope and dignity. It is irresponsible to suggest that teaching people to identify objects and request desired items is a dead end.. that leads to undisciplined behavior and potential violence. If Dr Blank has such incredible methods, maybe they should be mentioned. I see here nothing but negativity. I am not sure Dr Blank knows how to communicate fully. Maybe Apple should send something..
04:29 PM on 11/18/2011
Reality is that many children and teens have learned language through Dr. Blank's methods in the past two decades. Not just by naming things, pointing, pressing a key: people who were labeled "nonverbal", people with severe learning disabilities are now able to communicate properly, and use the tenses better than most Americans. It is not my opinion, it is well documented in print and video (here is one http://www.youtube.com/watch?v=ulbl4fUeg6g&list=PL1B584DE639BCE0F5&index=1&feature=plpp_video).
So, before writing offensive comments, please read Dr. Blank’s letter carefully, and then do some research if you don’t understand what she is talking about. To me, the 60 Minutes segment was an infomercial for the IPad, all smiles, and simplistic happy endings.
03:55 PM on 11/18/2011
We agree that "Computers and related devices are fantastic"...aka Alternative and Augmentative Communication, or AAC. While we serve families of non-verbal individuals with autism using the LAMP approach, we've found the most success using devices that feature several characteristics. The devices have single words (which can be put together in unlimited ways to express wants and needs), consistent, easy access to most commonly used words, a motor plan/sequence to "say" a word is unique and consistent, and a large vocabulary is available with minimal sequencing. Other features include icons being available with multiple meanings to allow shorter motor plans and enhanced rate of communication, which also allows the individual to have a vocabulary with thousands of words, as well as using that same icon sequence to say a word to represent all meanings of that word. We recommend having a quick screen re-draw time and auditory response after pressing icons, a language software that allows progression from 1st words to complex language, a quick and easy masking feature, and a digitized and synthesized speech. Recently, we have found that many of our success stories have featured PRC's VantageLite, as with a few modifications, out of the box, it has fit most of these characteristics. This isn't saying that we don't use an iPad to support the individuals, as they CAN be very motivating, with both educational and entertaining apps to use in therapy, but for communication we have struggled to find an app that teaches language.
12:15 PM on 11/18/2011
Also...Using the camera on the IPAD is crazy useful in building conversation. Taking pictures of where they go, what they do and what they may have eaten for dinner in order for the school to then take those pictures and relate it to their own lives through building conversations which can integrate with whichever communication app they have. Teaching the typical children in the class to ask questions to the child with the ipad and helping them answer also hugely helps socialization.

The way to stop the 'i want' when followed by a no with aggressive behaviors is to always give a choice to give them some power in what happens to them. IE...I want soda...No, sorry no soda it hurts your teeth but you can have _____ or _____. Not necessarily something that an Ipad is needed for but it's there in real time to find other options immediately. These kids need some control over there lives, just like the rest of us do, giving them choice after saying no almost always alleviates behaviors and with an ipad you can stop the temper tantrum easier because any and every visual can be called up so quickly because anger and excessive sensory information can often shut down auditory processing.
12:12 PM on 11/18/2011
Oh boy. Not teaching "I want" is teaching kids with autism that communication doesn't pay. After "I want" you teach "I'd like," "can I have," "may I have," and all sorts of iterations. In the meantime, you are building other language repertoire such as asking questions, answering questions, building sentence length, adding adverbs and adjectives, etc. Someone needs to read up on Skinner's Verbal Behavior.
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Dr. Marion Blank
01:42 PM on 11/18/2011
A common thread in many of the comments is that “I want” request language is a way, if not THE way, to communication. While this belief is widely held (particularly in the world of ASD), it is not accurate. Specifically, communication starts, via channels such as body language, well before spoken language develops. As a result, when a child first starts to use spoken language and wants to request something, s/he will choose to use gestures (body language) rather than words (spoken language) even if s/he knows the word(s) in question. In other words, “I want” (and its various iterations such as “I'd like," "can I have," "may I have,") is not the way language is used at the outset.

At the same time, the responses serve well to reflect the comments I made regarding the desperate need for a discussion of what constitutes key components of language and communication. Decisions have been made and programs developed (that are now set in stone) without this analysis ever taking place. The tone of many of the comments suggests a strong aversion to considering such an analysis. When key issues cannot even be placed on the table for discussion, the outlook for a field—and for the children-- is bleak.
11:52 AM on 11/18/2011
The builder series apps have been a significan­t tool in helping to expand conversati­on. Developed by a father of a child who found that the labeling apps just did not help in conversati­on. That fact is that the IPAD has huge potential in gathering informatio­n, in having an all in one tool to help teach each part of language, to track, to teach new items in real time, etc but there are not enough organized teaching lessons that have been developed with it in mind yet.You have to find the avenues to teach per individual child. Preprogram­ming sentences does not do much to help them figure out how to develop a sentence.
The problem exists in teaching children with autism language in the same way that is expected of general knowledge of language gaining in typical children. Children with autism often learn in chunks of words, not in the building of one word to two words to three words..My son regressed into autism, he originally learned language in the general way but with the injury to his brain it changed the way he learned into chunks of words..Jus­t look at Temple Grandin (who learned in chunks), learn from her and others that were able to gain significan­t language.. The fact is that generally children with autism are substantially underestimated..The Ipad helps destroy the myths of 'he can't do____' and gets on to the business of figuring out what he or she 'can do'..
02:18 PM on 11/18/2011
Love the Builder Apps! Really helped get us past a language blockage with my eldest. Xx
12:39 AM on 11/21/2011
the Builder apps have been overwhelmingly positive for my family, too:)
10:48 AM on 11/18/2011
(Part 2) My son worked long and hard for many many years with a vast array of computer based language development tools, including the Sentence Master program (all under the direction of leading SLPs). Our experience was that, for all the time and money invested (the money running into the tens of thousands of dollars), the "specialized" software for autism was not as good (or well designed and appealing to use) as off the shelf language and reading programs for typical kids.

As you know, it's really "autisms", so one size fits all approaches are doomed to fail. I loved the 60 Minutes piece because it offers genuine hope to parents and people with autism that more than a small handful of folks are working hard to develop the tools they so desperately need. I think the piece (which did rely on input from top consultants in the field) will lead people to ask their teachers, administrators, and professionals about what assistive technology may be available that will help them. That alone is a very good thing. I do wish that media types would always insert the word "some" before "autism" though. For more on app development, see "Hacking Autism"
http://www.hackingautism.org/
10:46 AM on 11/18/2011
(Part 1) Dr. Blank, with all due respect for your efforts, academic credentials, and body of work, don't you think highlighting your conflicts of interest with other software developers is appropriate beyond the affiliations stated in your "bio"? In my view, established professionals in the field of autism have all too often had the tendency to first defend their turf. This stifles innovation and progress. Experience and education are critical to delivering a quality product, but so is out of the box thinking, as represented by the apps and IPad delivery system highlighted on 60 Minutes. Is this program perfect? No. None are, including those you are involved with. They all have limitations and their users all have different needs. This one does look like a useful tool though. (Disclaimer: my son has autism, is verbal but cannot read beyond sight words and short sentences. We do not use this program.)
10:22 AM on 11/18/2011
Raising a 5 yr old non-verbal autistic child I found the 60 min segment a great place for people to start. My son uses a Dynavox Maestro to communicate, very similar to many APPS for the iPad. I Understand that expressing wants all the time is not going to get someone far but isn't that where all language starts? Most typical children will not learn anything on their own if they are not nurtured and the same goes for those on the spectrum. It takes the hard work of caregivers, teachers & therapists to make the most out of the APPS for the purpose of learning. My son uses the iPad and Dynavox together as learning tools. Both are helping him identify nouns, verbs and creating sentences in a way that he can follow and ultimately communicate in an appropriate fashion. The segment did leave unanswered questions but maybe it was only meant to inspire people learn more about Autism & communication.
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Ariane Zurcher
Writer and blogger
08:32 AM on 11/18/2011
Thank you for an outstanding piece. My daughter is almost ten and was taught early on to express herself with "I want" statements. In the beginning we were ecstatic that she was asking us for anything after years of single word demands or screaming as the only way she knew to have her needs met. As the years passed "I want" did not blossom into increasingly complex language. Thank you for articulating so beautifully what is needed. For children like my daughter, "I want" and learning to identify a series of objects will not help her navigate the world or express herself.
06:42 AM on 11/18/2011
That's why the Grace App manual explains & includes the "Look" card for developing shared attention, the "no" and "wait" symbols for taking control of expectations and the "I need help" for explaining specific difficulties without reverting to frustration temper tantrums as you can't express what's wrong. It also has "tell me where it hurts" section to teach specific tacting on pain in the context of the users own body.
And yes, both my severely autistic kids have used laptops with a plug in mouse since they were 3. They can also go from pc to mac seamlessly while I struggle. It was a very simplistic story but hey, that's 60 minutes right? Xx
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Dr. Marion Blank
10:46 AM on 11/18/2011
I did not say, nor do I believe that the issue rests with the technology. There are virtually no limits on the language available via APPs or other computer-based devices. Anything spoken can also be expressed via written language--or by programming a computer to speak. The issue is the extent to which "I want" request language has (invisibly) dominated the intervention scene and the failure to recognize the cost of that domination. It would not have been difficult for "60 Minutes" to relate a clear, simple account--indeed, it is their responsibility to do so. A "simplistic" account is quite another matter.
02:16 PM on 11/18/2011
Nor did I infer that. I actually agree with you and the many others who found the 60 minutes item a bit misleading.
As a parent I did Hanen More Than Words, Pecs, Carbone's Verbal Behaviour and a number of therapist lead parent courses in order to learn to develop my children's language (I have 2 with ASD)
My experience with the growth in consumer tech solutions is that new parents are expecting it to do everything straight away. I call it the "toaster pastry" solution to developing your child's communication. Whereas you are better off learning how to toast the bread, butter it and and add your choice of spreads to suit your child's individual needs. Handing them an iPad without assessing what will work best, is like whipping open a toaster pastry & popping it in the toaster- no one learns anything.
12:43 AM on 11/21/2011
Dr Blank, your open latter did not express this clearly. Not. At. All. It was as irresponsibly written as their peice.
08:30 PM on 11/17/2011
Why thank you SO much for presuming that autistic children don't get past, or perhaps are predisposed to never getting past the 'I Want' stage. I note that you don't bother to quote any studies or statistics. So I guess you should think we should take your offensive words on faith?

Doubtless you are also committed to 'curing' autism as well. Bring it on. As a 51 year old Aspergergian, I dare you to try to cure me.

Please, just go back to your daddy's snake-oil farm instead of insulting those of us who actually have to live with the condition. Your characterizations are dangerous, offensive, and harmful to every adult living on the spectrum today.
Kate Fletcher
crooked timber
08:40 PM on 11/17/2011
I agree. I found several extremely annoying inaccuracies in her letter. I think it would be far more productive to have input from people actually on the spectrum, in order to determine how helpful any new technology can be. It is not as if we are unable to give such feedback!
10:51 PM on 11/17/2011
Ok. I'm HFA (hate the sound of assburgers) and I have a son who is severely affected by language deficit, but is otherwise what they call moderately autistic. He's 12 and is very much stuck in the pubescent I Want situation described in this letter. He is also deeply interested and involved with computers and other tech - whatever he can get his hands on. As much joy as he gets out of using these devices, and as close as that mutual interest has brought us, and as clever as he is in the way he uses them, none of them has ever helped him actually communicate more than basic wants which is something he can do far more easily and effectively (from his perspective) by simply pointing at things. Dr. Blank has shown a far deeper understanding of severely affected *children* than is often seen in venues such as huffpo and I hope NTs can get something out of it. Because if 60 Minutes tells them there's an app for autism, they're likely to think how nice it is that the iPad cures autism.
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Dr. Marion Blank
01:27 AM on 11/18/2011
I welcome input from people on the spectrum. Further, this is not the issue I was writing about. I did not, and do not, question the helpfulness of the available technology. Computers and related devices are fantastic –but by themselves, without high level content, they will simply be offering the children a repeat of what currently dominates the field. Many voices need to be heard if we are to create truly effective systems for teaching language. The key is to initiate such an analysis—an analysis that is long overdue.
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Dr. Marion Blank
01:24 AM on 11/18/2011
I regret that you were upset by my comments, but it seems as though we are talking about different groups of individuals and different issues. At no point did I mention Asperger’s who, like you, are known to possess extensive language abilities. The 60 Minutes program focused on persons who do not speak, who want to express themselves and who gained some level of verbal expression via APPs. My purpose in writing was 1. to show that the APPs are not unique and are part of a long known interest that children with ASD have in computers and 2 to characterize the type of language that was being fostered so that parents and professionals can gain a clearer idea as to what is being achieved. Hopefully with this knowledge, real progress can be made in enabling those who want a language system to gain access to this phenomenal human ability.
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LandonBryce
08:11 AM on 11/18/2011
Dr. Blank,

Please don't ever write again that it is dangerous to teach autistic people to say what they want. Maybe what you meant to say was don't stop there-- and I would have no argument with that. But that's not what you said. Autistic people live in a world that regularly ignores us and what we want. Parents and professionals often have a very difficult time taking seriously the volition of people with autism. I don't think anyone who actually understood the real problems adolescents with autism face would say that the problem is that they've gotten too good at asking for what they want. It is a much more serious problem that when they communicate needs that make parents and professionals uncomfortable (for sex and relationships, mostly) it is much easier to demonize those legitimate needs than to come up with realistic solutions.

You make the assumption that since Andrew has Aspergers, he does not know anything people who have language challenges. That's bigotry. It's assuming that he is less than you, that he cannot be interested or knowledgeable about the autism spectrum except for his own situation. In his case, you happen to be completely wrong. Please learn more about real people with autism before you write anything about us again. You don't understand. You aren't close. You're making things worse for us. Please stop.
12:12 PM on 11/18/2011
I will have to stand with Landon's statements on the subject. Perhaps I did not articulate correctly.